Patient Stories

Yvonne's Story

In November 2004 Yvonne was diagnosed with acute lymphoblastic leukaemia (ALL). Yvonne now works for Children with Cancer UK and tells her story:

Symptoms, infections and antibiotics

Before I was diagnosed, I knew very little about the disease which is probably why I never associated the symptoms I had with leukaemia.

Looking back, I now know that it probably all began with the lump I found in my groin which I was later told was a gland. I did go to the doctors, but they never suspected anything so serious. A couple of weeks later I got a cold which I couldn’t seem to shift, followed by a throat infection. I went to my GP again and he simply prescribed me antibiotics.

I was losing weight. I put this down to the stress of recently having started full time work and my job was quite pressured. I was constantly tired. I put this down to working 9-6pm, six days a week.

I was getting bruises all over my legs and arms. I thought this was because I was a little bit clumsy and always banging into things at work. Walking up and down the stairs was a struggle. I thought that was just because I was unfit. Never once did it cross my mind that it was anything life-threatening.

On Sunday 14 November I came home from work exhausted. My mum said that I looked yellow. I thought she was seeing things and just went to bed. When I got up on Monday morning I was still feeling unwell and tired but it was a busy time at work so I didn’t consider not going in.

Mum announced she was taking me to A&E

I was just sitting in my kitchen eating an apple before leaving when my mum announced she was taking me to A&E at Queen Elizabeth Hospital because I ‘just didn’t look right’. She phoned one of my work colleagues to explain that I would be in later. Neither of us thought that I wouldn’t get home that day.

We waited to see the triage nurse. She told us it was ‘probably just a bad case of flu’. We both felt a bit silly. The triage nurse wanted a blood sample, which we didn’t think anything of. I was then seen by a doctor. We once again explained everything that had been happening over the six weeks or so.

It felt like I was completely wasting their time as it all seemed so random. A drip was put in my arm. Again, I thought this must be procedure. About 10 minutes later I was moved to a side room.

Here, the doctor I had originally seen told us she thought I had Profound Anaemia. We thought ‘great, some iron tablets and I’ll be on my way!’ There was something else, however, that I hadn’t told them and that Mum thought I should mention.

The day before I’d been driving to work and something happened to my left eye. It felt as if there was something in it and all day it just wouldn’t shift. I could see a dark shape which was obstructing my sight. An eye doctor came to have a look and later told us that the back of my eye had haemorrhaged.

At around midday, Dr Salla, a registrar from the Haematology ward, came in to talk to us. He had a nice friendly face but we were never expecting the words that came out of his mouth: “We suspect you may have leukaemia.”

We were both just silent; I couldn’t understand what he was saying. I knew it was cancer of the blood but that was about as far as my knowledge went.

He went on to say that they would do a lumbar puncture which involved removing a piece of my hip bone and extracting the bone marrow in order to test how advanced the leukaemia was.

We were told that I would be staying in. I was moved to a ward while I waited for a bed to become available on Ward 21 – my new home for the next six weeks. I had to stay isolated because my blood levels were so low that it was dangerous for me to be in the open public.

The day before I had been on a shop floor interacting with people throughout the day! On the Wednesday evening I was eventually moved up to Ward 21.

The start of chemotherapy

They began my chemotherapy on Thursday. It was strange and felt quite surreal. I didn’t feel particularly ill, but yet I was confined to this room and being given 30 or so tablets to take morning, noon and night.

During the second week of chemo, I reacted. It didn’t happen instantly. I began by getting colder and colder until I was having convulsions. They decided that my body wasn’t reacting too well to the treatment and was too weak to take any more.

It had to be put on hold. I became more and more poorly and developed a number of infections: in my arm from a cannula, in my bowel and in both my lungs. I had to take morphine for the lung infection as the pain was too much to take.

The moment Dr Salla had mentioned leukaemia, I’d lost my appetite. I had now eaten next to nothing for weeks and my weight was decreasing. The doctors were obviously worried as I was barely getting out of bed. It was getting closer to Christmas and I didn’t want to be in hospital for it.

Losing hair and weight

After 10 days of being extremely ill, I was able to get out of the bed with help. I still felt a bit groggy but able to stand up for a little while.

My hair had started to fall out – after only two lots of chemo. I knew it was going to happen and when I realised, I cried. However, on this day, probably still a little drugged up from the morphine, I stood in my little bathroom and brushed through my hair.

It was falling out in clumps; I brushed until no more would come out. It was weird. I was still barely eating so the doctors decided I needed a feeding tube. I was so unhappy because that morning I had eaten a bowl of cereal.

I pleaded with the doctors not to have it, but they insisted. They said if I continued to feed myself, and be fed at night through this tube, they would think about letting me out for Christmas. It was pure bribery, but it worked. I began getting stronger and getting out of bed more. My muscles were strengthening and I was determined not to be in hospital when I should be opening presents at home.

There was one last thing I had to get through: the infection in my arm was getting worse and needed an operation. This went smoothly but meant I had a huge bandage around my arm. It didn’t matter; all I cared about was being at home.

I got out of hospital at lunchtime on Christmas Eve. My mum took me shopping for clothes; I had lost so much weight that none of mine fitted any more. It was nice to be out and free. It was the best Christmas I have ever had.

I had to go back into hospital on 29 December, which I was dreading. I would spend New Year’s Eve in bed. I was quite down but my parents and friends did whatever they could to try to cheer me up. I was allowed home every other weekend. This continued until May.

Yvonne went into septic shock

On the first bank holiday in May my mum arrived at the hospital to take me home. Usually I would be waiting, dressed with my bags packed, but I was still in bed. I insisted I was fine and we went home. She said she knew something wasn’t right as I wasn’t my usual bubbly self.

I spent that weekend in bed. On the Sunday night I had tummy pains and was uncomfortable. I woke up at about 2am feeling hot. I took my temperature and it was 38 degrees. I woke Mum up and told her. She called the hospital and they said to leave it an hour and then check it again. At 3am she came and checked it and it had risen to 39.2 degrees. She rang the hospital and they said to bring me in ASAP.

At 4am when we arrived, I could barely walk. I gradually slipped into unconsciousness but remember a lot of people being around, and having needles stuck into me. It turns out I went into septic shock. They considered moving me to Intensive Care but the risk of me catching an infection was too high. I had a nurse at my bedside for three days. I eventually came out of it, but had to spend three full weeks in hospital until I was completely better. This, again, put my treatment back.

In April 2005 I began having brain radiotherapy. This was to kill any stray leukaemia cells which may have crossed the blood-brain barrier. Initially it involved having a plastic helmet moulded and marked up so they could zap my brain in the same place each time.

This treatment lasted for two weeks. It made me quite tired, but was pain-free which I liked! I was still in and out of hospital for chemo treatments, but, as I got stronger, they were getting easier to bear.

Maintenance treatment and helping others

In October 2005 I began my maintenance treatment. This was a year of quarterly Lumbar Punctures where they would inject chemo into my spine, and an injection of Vincristine into my arm. I was also on three tablets a day.

In March 2006 I was beginning to feel quite low. I was bored. I was feeling generally OK but was not allowed to work. I wasn’t allowed a holiday abroad either so my mum took me away to Brighton on a mini-break. While in Brighton, I decided that despite not being able to technically work, there was no reason why I couldn’t do work experience. I could do it to suit me and it would also be good experience for when I was allowed back to work.

When we returned home I emailed a few leukaemia charities: I wanted to help people who were going through what I had been through. I got a reply a day later from Children with Cancer UK. I was so happy; I went in to meet the Events department and was asked to start the following week. It was perfect. I volunteered three days a week.

They understood that I had regular hospital visits and may have to take time off at short notice due to illness and side effects from treatment.

On Friday 17 November 2006 I took my last tablet. I had arranged a celebration gathering that night. I was so ecstatic about the thought of waking up the next morning and not have to take any tablets. I still have regular check-ups but am fine. It sounds strange to say, but if I hadn’t have had leukaemia my life wouldn’t be what it is today.

I love my job and I love the people I have around me. It has made me appreciate things a whole lot more and I now know that life can be too short so you must enjoy every part of it!

Yvonne in 2015 – 10 years on

I continue to work at Children with Cancer UK as Senior Challenge Events Coordinator and really enjoy working with the team here.

In September 2013 I had a baby girl. This was amazing, especially since the doctors told my parents I would probably never be able to have children after my treatment.

In December 2013, after seeing that I had had a healthy baby, a straightforward pregnancy and no problems relating to my leukaemia since end of treatment, the doctors decided my time was up and I no longer needed to be under their care. I was officially discharged and no longer require the annual check-up.

I’m now planning to get married to my fiancé Paul and everything is going really well.